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Lung Mets/Time

mojogirl67
Posts: 288
Joined: Oct 2018

I am trying to gather as much info as possible to make descisions to come. I am waiting for my referral appointment back to MUSC in Charleston and thinking a million things at once. Does anyone have information to share on the growth rate of colon mets to the lung without treament? I know everyone is different but any info is appreciated. I am combing over info in the event that surgery or "berry picking" the nodules I have won't be an option. It just seems that the chemo causes so many other issues, yes, tolerable but not pleasant, and at some point quits working on most. I just don't know if I want to spend my time running to infusions that seem to ultimately lead to a breakdown of my body and scans with "questionable" spots that no one can really pin point. It's seems crazy to be put thru so much (speaking for me only) to gain time that is not "quality" at all. I know we all have to make those decisions and I am not trying to bring anyone down with my questions or posts. The chemo just seems like such a crap shoot. I hated it before and I can't help but wonder how in the hell my body is going to tolerate it with a compromised liver and colon now. At this moment, it just doesn't seem worth it to me. My oncologist hinted that it could shrink things for possible surgery or radiation down the road. If I only have 5-6 very small spots with the exception of the 8mm one, why not surgery or radiation now??? Praying my appointment at MUSC comes soon. Any insight on growth rate without treatment or input on surgery/radiation only would be appreciated. I realize the numbers are low for long term but I am still here when I shouldn't be so I don't play the numbers...Hugs to all..M

SandiaBuddy's picture
SandiaBuddy
Posts: 1049
Joined: Apr 2017

You are facing decisions that I dread in advance, if I have to face them.  I always pre-suppose what I will do, but of course it is different when you are facing the reality.

As to waiting for your appointment, I found that a doctor to doctor phone call can speed things up incredibly.  You might want to ask your current oncologist to make that call ASAP (especially in the holiday season).  I imagine it would be a relief to get the second opinion, no matter what the results.

Good luck to you in this difficult time.

SoCal42
Posts: 78
Joined: Jul 2017

I'm sure everyone's cancer is different, but I have had very slow growing lung mets, which were monitored for an entire year by Oncology and Pulmonology before pursuing a surgical biopsy to confirm. Because they were were so slow, it wasn't clear at first whether they were really mets or just inflammation from the chemo I'd just finished, or possibly areas of limited infection of some kind. They were monitored by CT scan every three months during that time. The largest met probably went from 4 or 5 mm to 12 mm in that year, and the others were smaller to start with. They all seemed to grow at exactly the same, steady  rate during that whole time.

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

Mine newest round of Mets was spotted October, 2017, confirmed next scan December, 2017.  Did not need to go back on chemo until October, 2018 when a scan showed cancer bloom in later August (needed radiation first for spine that cropped up and then a couple of weeks before starting treatment after radiation)

Butt's picture
Butt
Posts: 354
Joined: May 2018

You want to see a thoracic surgeon and a radiology guy. If one takes you there is a possibility of avoiding chemo and entering NED.

mojogirl67
Posts: 288
Joined: Oct 2018

Thanks Butt and all who responded. I just posted about getting my records to the tumor board by this coming Tuesday at MUSC. I'm making the calls and pushing to get it done myself. I am not waiting and wasting precious time. Hoping they will consider getting the mets out of me without chemo.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I think it's very important to be proactive. Too many people wait to have the doctors follow up. Often they do but things fall through the cracks at times. My brother became my medical pitbull so to speak until I learned how to navigate things myself. It's nice to see that other people are doing this too. We should participate in the decisions we need to make with our health.

Have you/they looked into RFA's at all? (Radio Frequency Ablations). I've had several over the years and they were effective and non-evasive. I only stayed the night on my first one. The other 5 or so were same-day surgery. Unfortunately, I'm not able to have them done anymore due to a radiation treatment I had 6 years ago. I knew the risks but didn't have too many options since the tumor was by an artery. 

All things being equal, chemo certainly does suck. It's basically controlled poisoning. I found that part of it is all a waiting game. One month after I was dx'd, Avastin was approved. The right drug at the right time and it worked for me. My liver wasn't operable due to a larger tumor next to my hepatic artery. The Avastin cut the blood supply to the tumor causing it to shrink so I became clear for surgery. Another drug (can't recall which one right now) came out when I needed it. I attribute it to having good luck. I do believe that they are trying and getting closer to understanding how cancer works. My niece has been involved in working on this problem for 5+ years as a medical researcher.
Best
-phil

Joan M's picture
Joan M
Posts: 406
Joined: Oct 2016

Mainly If the tumors are  in one lobe of your lungs or all over the place.  Also most times they won't do any radiation or ablations if the tumors are really small as in less than one centimeter.  It sounds like you may get a doctor who is more aggressive at treating your cancer, but every clinic has similar protocols, as in not aggressively treating small lung mets.   

I was really close to being NED in September 2017 when I had cryo ablation on one lung tumor that was 11mm.  the doctors said the other 4 or 5 smaller ones would disappear with chemo.  However I had a setback due to gall bladder problems and needed a series of surgeries which meant being off chemo for several months.  the remaining lung tumors have shrunk and regrown over the years, but they haven't identified any new one.   and the best part is that I am still alive even with being on and off the crappy chemo over the last almost 4 years. 

Please post if you are able to find a doctor to help you eliminate your mets!   I wold be interested in having my larger few mets removed too, if any doctor is willing to do it.

Good luck to you.  

 

myAZmountain's picture
myAZmountain
Posts: 326
Joined: Apr 2018

Yes please see a surgeon--and try and get any old scans that may have included your lungs (not sure why they didn't??) to see the progression --When too small to detect by PET scan you can only really determine malignancy by seeing if there is growth, disappearance or stagnation over a perdiod of time--I am really surprised a nodule 8 mm would not have been seen if you had your lungs looked at earlier. I think oncologists are good with the chemo but not at reading scans.

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